What it really feels like to have an autoimmune disease. The ugly truth..

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Well after some indescribably wonderful responses to yesterday’s blog post I’ve decided to share a little more. To explain a little more. To hopefully enlighten those around me a little more about what I go through. To be fair I cannot complain if I’m not willing to try and help people to understand.

A normal day in my house starts off like this.. I wake up to my gorgeous daughter coming and waking me up. That’s the best bit of my day! Her little face is the motivator to drag my sick sorry self out of bed. But not before I pull her into the bed for cuddles of course.
But once she has enough its “Get UP MAMA!!!!” Try explaining to a three year old that you can’t quite get going as fast as she can because your sick. I don’t want her to be told “mama can’t baby,because she is sick, or slow down baby mama can’t go that fast” I don’t want her reality to be that her mother is sick and can’t do what “normal” mothers do. I don’t want her to grow up with a fear of her mama being sick.
She gets up and races off into the kitchen with our two dogs and our kitten to explore the fridge for whatever strange thing she has decided she wants for breakfast today. I however am sitting on the side of the bed calling out directions like “careful baby don’t touch that” or mamas coming just a sec” because I can’t jump up out of bed to chase her. It’s not because I don’t want to or because I want five more minutes sleep. I actually can’t!
My body won’t  let me, this is a newish development which is making life with a three year old HARD! When I sit up my hips and back ache like I’ve slept on a pile of bricks, my knees almost can’t bend so you can imagine trying to stand!! When I finally get to standing, my ankles and toes ache like they are broken, and don’t forget my hips and hands and shoulders, they are all stiff too!
Then I hobble and I mean hobble out to the kitchen as I can’t really walk properly for about an hour after waking, it takes that long to loosen up. I go about my morning, I make baby’s breakfast, I make coffee and I hobble to the couch where I sit flexing my sore legs till they start to loosen up and feel strong enough to stand on I get up and start my day. This takes about an hour.
About two hours after waking the exhaustion starts to take its toll, I may have had nine or ten hours sleep but it won’t be enough, its NEVER enough! I feel so tired at this point that the slightest thing gets to me. I drop something and have to bend to pick it up and I start to cry because the effort to do that is so tiring I want to go and lay down.  On a good day I can, on a good day Miss 3 is at Kindy and I’m home and can sleep if I need to or on an extra good day my partner is home and he can take care of her while I go back to bed for a while.
But most days it isn’t like that most days since before my daughter was born its a case of keep going because  if you stop you won’t start again. It’s a non stop day till she finally crashes after twelve to thirteen hours of near constant activity. In which I’ve not only done my job as a Mum, I may have also in that day gone to work, cleaned the house at least twice, I’ve made three meals two snacks and plenty of drinks. I’ve washed clothes and made beds, I’ve done food shopping and entertained a three year old. I’ve done all of that while I’ve felt like I am crushed under the weight of sickness.
The best way I can describe it is like what a normal person feels like when they have the flu. Except that’s how I feel every day! You can imagine how hard it is when I get the flu! Which thanks to having no immune system I get for months one end with no breaks. I was so sick last winter I spent three months so sick I should have been in bed. But as any mother knows that’s just not possible when you have a child.
By the time she is in bed I am so sore even sitting down hurts. My whole body aches from head to toe and I’m so tired I have difficulty breathing. My knees are so sore the pain radiates up and down my legs and my back is so sore I can’t sit or lay down without pain. I try to snatch a few quiet hours in which I do as little as possible. This is my “rest” time. I inevitably fall asleep as the moment I stop moving I’m so tired I pass out.
Then I wake up and so begins another day. Another day of exhaustion. Another day of pain, another day of missing out on being healthy, another day where I am constantly reminded that I’m not like everyone else. At thirty one I am old! I am sick! And it won’t get better, only worse. There is no miracle cure for what I have. No magic pill that makes it better.
There is only ways to manage it. And even the medicine that manages it doesn’t keep the symptoms at bay it merely stops it from getting worse. It doesn’t take away the pain or the exhaustion. It doesn’t perk me up and make me feel good. It just stops my body from making more antibodies that are attacking my thyroid.
That’s what Hashimotos is. It started out that my thyroid glad was under active. Then in an effort to fix itself my body makes antibodies, but instead of helping,the antibodies attack the thyroid and are effectively killing it. So what was once not working well is now trying to kill itself. The medicine try’s to stop that from happening. It doesn’t fix me though, it doesn’t make me feel better it just stops the rot so to speak.
I’m not writing this to complain or to make people feel sorry for me. I’m writing this to help people understand what I go through every single day. I’m medicated and its this bad. This is as good as its going to get. It’s a struggle every single waking minute of every day.
People who live with this debilitating disease feel sick all the time! They feel tired and overwhelmed every day. They feel pain that never stops. They suffer mostly in silence because people don’t understand. They don’t know how hard it is. So I’m trying to explain it. No I don’t have cancer, I don’t have aids. But I do have a disease that will never get better. I have a disease that makes every day activities that most people take for granted really difficult for me. I have a disease that makes it difficult to fall pregnant, that makes it difficult to breast feed, it makes it hard to carry a baby to term. It makes it hard to breathe, it makes it hard to exercise. It makes it hard to do the simplest things. Some days it makes it hard to live. It makes it hard to function.
Do I wish I could change it ..YES! Do I wish it wasn’t me… Yes! Do I wonder why me…yes! I wonder all those things and more. So next time you ask how I am wait for the answer because when I say I’m ok, I don’t mean I’m great I really mean I’m ok. Just ok. Because I won’t tell you everyday how I really am because I don’t have the energy to keep explaining it. So read between the lines because even on a good day I’m far from good and a good way from being great.
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Thyroid disease.. A thinky piece

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I read an article today about Cancer and the ways in which people get it wrong when talking to people with Cancer. It got me thinking…. I have a sickness, its serious, it will shorten my life, it affects my ability to conceive, my ability to breast feed, it robs me of many opportunities on a daily basis; yet no one talks about it….ever!
Its not a well  known disease, its doesn’t sound scary, it doesn’t have a lot of outward signs or symptoms. It doesn’t get a lot of coverage in the media. It doesn’t even really get acknowledged as a life affecting disease, but it is!
I wonder is this because it doesn’t sound scary? Or because it doesn’t look scary? I don’t know and honestly I don’t care, because let’s face it a disease that affects daily life in may complex and varied ways. Yet if I say I have Hashimoto’s thyroiditis the standard response from many people has been… Well at least you don’t have Cancer. What that’s my alternative? Cancer? like you’re sick but its ok because it’s not Cancer? Do you see how ignorant that sounds just reading that statement? Cos it felt very ignorant bearing the brunt of people saying it.
No I don’t have Cancer, I have an autoimmune disease, its life affecting, it may kill me and it makes the simplest daily activities difficult beyond words. But all of that is irrelevant because I don’t have Cancer? Gee thanks for the pep talk jackass!
Sorry if I sound enraged, funnily enough that’s one of the myriad symptoms of my illness. Rage, depression, extreme lethargy, shortness of breath, nervousness, intolerance to cold and heat, dry skin, hair that’s falls out in clumps so much that I worry I may have bald patches soon, joint and muscle pain, weight gain, difficulty losing weight, a puffy face, should I keep going or have you heard enough so far?
This is a disease that once you have it increases your chances of more autoimmune  diseases such as Lupus, rheumatoid arthritis, chronic fatigue syndrome, and a whole bunch of other fun illnesses too. Yet when I say I have it people blow it off because you know it’s not Cancer. Now don’t get me wrong I’m stoked I don’t have Cancer, believe me I have enough to deal with already with my health.  But the next person who diminishes my lifelong illness as less important because thank god it’s not Cancer will feel the wrath of a person with extreme rage and believe me it won’t be pleasant!
I am writing this in the hope that me person might read and think twice before diminishing someone’s experience of a really serious illness because its not only hurtful it’s thoughtless and ignorant.

By Midnight – Review

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Welcome to Ravenwood…The school with BITE

 

This week I got an advance copy of By Midnight by Mia James. This is the first in the “Ravenwood” series. By Midnight is looking to be the next in the Vampire craze that has swept teens and adults the world over, with the success of the Twilight Saga and the Vampire Academy Series it’s not hard to see that Mia James is on to a winning formula. Vampires, angsty teens and paranormal romance are the style du jour and its easy to understand why so many writers have jumped on this very successful bandwagon. Its entertaining, allows for a lot of angst and romance and of course has just the right amount of fear inducing horror to keep teens reading.

By Midnight is definitely aimed at a YA audience and readers of Twilight will definitely love this series. This is a bit younger than Twilight in its reading age but still infinitely enjoyable if you like a good vamp story. I am a bit of a devotee of this genre having grown up reading Anne Rice and Poppy Z Brite, so it’s no surprise that this new wave of vamp books appeals to me. These stories are far more palatable and appropriate for younger readers than vamp books of the past and its great that so many young readers are rediscovering a love of books.

By Midnight is the story of April Dunne she has recently had to move to Highgate in London from Edinburgh. She has left behind her friends and her social life. She has to face the horrifying reality of starting at a new school. But that’s not the worst of it. She is stuck living in an ancient creepy dump of a house that doesn’t even have mobile phone reception.

Her new school Ravenwood is a prestigious school full of talented and bright students. Now April is stuck with a bunch of rich beautiful and talented students. The only saving grace is finding a fast friendship with Caro and a budding romance with brooding and dark Gabriel.

But of course Ravenwood isn’t as it seems and there is a dark secret lurking beneath the surface. First there is the strange murder of rock superstar Alix Graves and then she is saved from a mysterious and dangerous situation in Highgate cemetery  by Gabriel. Then she discovers that a murder took place in the very same place that Gabriel saved her from. Determined to get to the bottom of things April sets herself on a path into very dangerous and dark territories which will test her resolve her strength and even her life.

No one said being a teenager was easy but at Ravenwood it could be deadly …

This is a great start to a series and Mia James has set a good pace for what will no doubt be a very successful series for her. This wasnt my favourite vampire book ive ever read but it certainly kept me turning the pages well in to the night and beyond. A great easy read that is super entertaining and enjoyable !

 

BlondiieC

xox

 

 

 

Love And Other Drugs – Movie Review

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Love and Other Drugs is one of the more surprising Rom/Coms I’ve seen in a while. For once the characters have depth and the storyline is actually romantic. We have also been spared the terrible one liners that seem to have taken over the genre of late, and for a very pleasant change …..The plot is believable..Yes Im serious it is actually believable.

 

Love And Other Drugs stars Jake Gyllenhaal as very charming and oh so devilishly handsome pharmaceutical rep Jamie. He is on the fast track with his career and uses his charm to get as far ahead as he can. But all of that changes when he meets the beautiful Maggie played by Anne Hathaway. Maggie is a free-spirited artist and almost the complete opposite to Jamie. Cue sweetness and gag worthy romance …but no not this time.This really is a great romantic film with very little of the token romance and a lot of beautiful acting.

This is of course a love story and yes it does have a lot of romantic moments but there are also a lot of heartfelt moments too. The story is that Maggie is a 26-year-old woman who has been diagnosed with stage 1 Parkinson’s disease, a tragic condition in an elderly patient, but made all the more tragic because of her age. Jamie falls in love with her knowing how sick she is and has to adjust to how life is going to be for them both if they continue their relationship.

The plot is simple, no surprises or great twists but it is the sheer simplicity of it that makes it so utterly beguiling. Anne Hathaway is at her absolute best in this role and it is easy to see why she has so many fans. She is stunningly beautiful, elegant and talented. And Jake Gyllenhaal proves his acting abilities know no limits in yet another surprising role.

The relationship sizzles on the screen and it is clear to see they enjoyed working together as their chemistry is astounding. The story line is sad and definitely one that will make even the hardest hearts melt. I cried and I laughed and my heart broke for the characters. I finished the film and I felt sad that it was over. I really enjoyed this movie so much more than I thought I would.

I like a good romantic film and im partial to a good laugh but this really is so much more than that. It is touching and sweet and just beautiful. If you havent seen Love And Other Drugs do yourself a favour and go and watch it immediately you wont be disappointed.

 

BlondiieC

xox

 

 

 

 

Live To Tell – Review

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I am a huge fan of crime fiction. You could even go so far as to say that it is my favourite genre. Lisa Gardner is far and away one of my most favourite crime writers. She is edgy and gritty and oh so scary,her books will leave you chilled to the bone and looking over your shoulder long after you finish them. Live To Tell was no exception. Live To Tell is an intricate story of three women and how their lives intertwine through a terrifying series of events.

 

 

He knows everything about you—including the first place you’ll hide.

On a warm summer night in one of Boston’s working-class neighborhoods, an unthinkable crime has been committed: Four members of a family have been brutally murdered. The father—and possible suspect—now lies clinging to life in the ICU. Murder-suicide? Or something worse? Veteran police detective D. D. Warren is certain of only one thing: There’s more to this case than meets the eye.

Danielle Burton is a survivor, a dedicated nurse whose passion is to help children at a locked-down pediatric psych ward. But she remains haunted by a family tragedy that shattered her life nearly twenty-five years ago. The dark anniversary is approaching, and when D. D. Warren and her partner show up at the facility, Danielle immediately realizes: It has started again.

A devoted mother, Victoria Oliver has a hard time remembering what normalcy is like. But she will do anything to ensure that her troubled son has some semblance of a childhood. She will love him no matter what. Nurture him. Keep him safe. Protect him. Even when the threat comes from within her own house.

Live to Tell starts with a shocking and brutal crime and I am happy to say for all you gore lovers that it doesn’t let up in its pace or its horror fest. Lisa Gardner is known for her violent crime writing and Live To Tell certainly doesn’t disappoint. This really isn’t a book for people who aren’t fans of crime though. If you don’t like dark and disturbing this really isn’t the book for you. Now all warnings aside it is FANTASTIC. I absolutely loved this book!

Not one to shy away from the more edgy topics and plot lines Lisa tackles all of it here. Family abuse, mentally ill children and brutal murder. This is a really scary look at the darker side of humans and what we are capable of. Filed with lots of twisty turny plot lines and of course the requisite scary bits this is definitely a book that will keep you guessing till the last page !

 

BlondiieC

xox

Love, Loss and Red Nose Day …

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This weekend just gone I read an article by Rebecca Sparrow about losing a baby and it prompted so many thoughts. How would I feel? What would I do ? How would I cope ? Who would  turn to for help ? Would life always be just a little bit grey ? Would I turn away from people who loved me or let people in ? The questions were endless but the one that stuck with me was, Where do you look when your whole world is turned upside down ?

Rebecca told her story today and it inspired me to find the answer to those questions for myself for my friends and for other women who have suffered that deep and lasting loss. No one can ever fully understand the grief that others feel, we can try but that loss is so personal, so deep and unrelenting that until you find yourself facing down that gun barrel you never know how you will feel.

We all know someone who has suffered,we have all suffered ourselves. We probably all know someone who has suffered the incredible tragedy of losing a new life. But have we really stopped and asked ourselves the questions that need to be asked ?

I think so many of us want to reach out but we don’t know how. Sometimes it’s not what we say but just being there that counts. And sometimes it’s knowing when to step back and give the much-needed space for healing. I sat here this morning watching my daughter play. She is two years old and watching her play and chat away to herself fills me with a joy that is unparalleled.

So then how is the grief of missing those moments ? The tender small snapshots of life. Not the big events but the times where you find yourself smiling at the little jokes they tell or the impromptu kisses. The firsts, the first real cuddle, the first time they smile, the first time they say I love you.

For mothers who lose babies they will never have those moments and for mothers like Rebecca, they have the heartbreak of knowing what they are missing and having to help themselves through their grief and their children.  To explain to older children why they don’t have a little brother or sister on the way or worse why their new baby brother or sister didn’t wake up today. How do you begin to explain that ? How do you find the words ? Where do you even begin ?

Many people, myself included may not realise that the SIDS foundation helps parents who have suffered this unimaginable loss. It is not just for parents who have been affected by Sudden Infant Death Syndrome but for parents who have lost children through stillbirth and miscarriage . These dedicated people have the answers that so often people can’t find. They are the professionals dedicated to helping out those who have suffered the greatest loss. The are the brave people who pioneer research to stop this unthinkable tragedy from happening.

If you don’t know what to say or what to do then check out the SIDS website, ask how you can make a difference. Give generously to this cause that helps aid in the sufferance of so many people. Or give some time. But remember that the best thing you can do is simply to say ….I care about you and im here when your ready !

For any information or fi you want to read Rebecca’s beautiful article I have posted links in the comments below. I hope everyone takes the time to read Rebecca’s story it really is powerful and so very brave !

 

BlondiieC

xox

 

 

 

There is plenty you can do and one simple one is uploading a picture to the red nose day website, for every  picture uploaded up to 15,000 Renault will donate $1 up to $15,000 dollars thats a huge donation for simply taking the time to upload a picture. I have included my pic, I have also made it my profile pic on Twitter and Facebook to help raise awareness of this very worth cause.

Carte Blanche – Review

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Carte Blanche is the latest book from Jeffrey Deaver and I have to admit my initial excitement dimmed a little when I heard it was a James bond novel. I don’t have anything against the 007 franchise but it’s not my style of crime writing. But happy to give it a go I suspended my thoughts and hoped for the best and I was more than pleasantly surprised. This is a book for fans of 007 to really sink their teeth into. Not the typical style for Jeffrey Deaver, but one he has done very well at.

“The face of war is changing and. The other side doesn’t play by the rules much anymore. There’s thinking in some circles, that we need to play by a different set of rules too….”

Fresh from Afghanistan, James Bond has been recruited to a new agency. Conceived in the post 9/11 world, it operates independent of Five, Six and the MoD, its very existence is deniable. Its aim: to protect the Realm, by any means necessary.

The Night Action alert calls Bond from dinner with a beautiful woman. GCHQ has decrypted an electronic whisper about an attack scheduled for later in the week: casualties estimated in the thousands, British interests adversely affected.

And 007 has been given carte blanche to do whatever it takes to fulfil his mission.

This is Bond at his charming, well dressed best. If you’re a fan of the 007 franchise this is the book for you. If not it’s definitely worth giving it a look. For me, this is the sort of good spy novel that while not believable, is so infinitely enjoyable that a few far fetched plot lines only add to the enjoyment.

Filled with mystery, suspense, fast cars and beautiful women and of course violence this is the sort of reading that u enjoy when you’re having a break from your more serious choices. Jeffrey Deaver probably won’t win any literary prizes with this novel but I can guarantee he will win himself a lot of new fans.

Buckle yourself in because Carte Blanche has all the thrills, spills, crashes and crazy antics you have come to love from Bond and even more. Complete with cool gadgets, outrageous scenarios, really amazing cars and the latest in cool “boy toys” this is 007 at his finest. Men will want to be him and women will want to know him. And take it from me picturing Daniel Craig as 007 doesn’t hurt the reading experience at all.

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